Self advocates with Down syndrome tell of their life experiences

self advocates WDSD(Photo by Beth Haller)

By Beth Haller
Media dis&dat, March 21, 2012

World Down Syndrome Day at a United Nations conference March 21 created a wonderful venue for people with Down syndrome to tell of their experiences as self advocates.

One self advocate, Shona Robertson of Australia (pictured with her mother, Penny
Robertson, Chair of Down Syndrome International), discussed her educational
life. She joked that her mother always said she began school at one week old
because she participated in an early intervention program.

Robertson attended a mainstream elementary school, where her classroom had a support
worker for her once a week.

“I was happy at my school, and my brother spent time trying to look after me,” she said.

“We used to walk home together but I always wanted to stop and swing. I was a swinger,” Robertson said with a laugh.

At age 13, Robertson and her family moved to Indonesia. For the first few months there, she got a taste of home tutoring and said she didn’t like it. “I missed my friends and playing,” she said.

But then her mother established a school that accepted all children.

“It was a fun school because we went on lots of excursions,” she said, giving examples of visits to volcanoes and rides on elephants.

Having completed her education, Robertson works as an administrative assistant for the Gold Coast City Council in Australia. She enjoys working out at the gym and taking care of her dog, Ollie. She is also engaged to be married in October.

New York self advocate Jason Kingsley, author of the book Count Us In: Growing up
with Down syndrome
, reminded the audience that people with Down syndrome “have the same hopes, dreams, and goals as anyone else.”

Kingsley emphasized that people with Down syndrome can accomplish much in their

“We just need opportunities to learn and grow and experience a lot of things,” he said.

Another book Change the way you speak and I will change the way I listen from Carpe Diem Association, Brazil, was launched at the conference. It is an accessibility book written in English and Portuguese by people with intellectual disabilities.

The conference also had a media panel in which self advocate self-advocate Tathiana Heiderich told how she had inspired a character with Down syndrome in a popular Brazilian comic.

Heiderich hosts a show called Being Different in The Netherlands. Her family helps her create the show, which she says tries to be entertaining and informative. She uses Facebook to publish her work.

“We can work, date, get married, and make our own choices,” she said. “We still need the
media’s help because there is still much prejudice.”

The media panel also discussed the attitude change that occurred when a Brazilian soap opera included a character with Down syndrome.

The soap opera “Paginas da Vida” (Pages of Life) added a storyline and character with Down syndrome, Clarinha. She is played by young actor Joana Mocarzel, who has become so popular in Brazil that a doll has been based on her. This child character changed attitudes about Down syndrome in Brazil from negative to positive, according to Patricia Almeida, the organizer of World Down Syndrome Day.

Other panels at the UN conference discussed the UN Convention on the Rights of Persons with Disabilities (CRPD) and Inclusion – The Importance of Global Coordination Efforts to Promote the Convention, Human Rights and Political Participation of Self-Advocates, Changing Society Attitudes – From Neglect to Protagonist and Living in the Community, and Care and Treatment – Improving Quality of Life.

The conference also premiered the video, “Let us in – I want to learn!” Presented by Down Syndrome International, the global video was created in partnership with 68 countries for World Down Syndrome Day 2012.


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